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Posted 8/31/2011 10:59 PM (GMT 0)
Hi All,

Kids and grandkids left yesterday...7 -1/2 months old and 2-1/2 years old.  First time since my diagnosis of SLE.  I am totally wiped out.  How long does it normally take until I can be back to my somewhat-not-so-normal-usual Lupus fatigue??  I am in brain fog half the time and my body feels like it's on the verge of collapse!  It was a joy having them here, as I dont see them very often, but I am having a hard time getting my strength back.  We leave on a 3 week trip in 8 days, and I am concerned about how I will handle it, being so weak now.  What's the "bounce back" window???

Posted 8/31/2011 11:56 PM (GMT 0)
Grandchildren are such a blessing but they are exhausting! If at all possible, I would try and have a couple of "unwind" days (basically doing as little as possible), and then gradually work back up to your normal routine. Enjoy your travels and try to rest as much as possible!
Posted 9/1/2011 1:22 AM (GMT 0)
Dear Fran,
Thanks for the advice! Can I assume you are a grannie as well? I would love some "me time," but I have one week to see two doctors and pack for a long trip to a cold place. Not much time for "down time." Once we get to our destination, I'll probably sleep for a week! I see my hematologist on Tuesday...and hope my white count didn't fall even lower (last was 2.5). I've been told I need to wear a mask on the plane, but I just can't see wearing a mask for 15 hours. This is my first long trip as a newly diagnosed SLE.
Sarah
Posted 9/1/2011 2:06 AM (GMT 0)
A mask for 15 hours? That would drive me nuts! If you're going to put in the effort to wear it all 15 hours, be sure to find one that will actually protect you, and wear it properly. It's surprising how ineffective masks can be. The mask should conform to N95 standard, like these ones by 3M, if you can find them before your trip - http://www.magellans.com/store/Health___Hygiene___Air_Purifiers___Breathing_MasksIF115

And here's an interesting blog I found on the subject. Kind of a fun read :) - http://gettingclosertomyself.blogspot.com/2009/10/its-called-lupus-stupid.html

Happy travels! Hopefully packing isn't too laborious. I'm currently packing for a trip, myself, so I feel your pain.
Posted 9/1/2011 11:52 AM (GMT 0)
Dear Slee51,
I feel that there are germs everywhere and simply because we have an AI disease, we can't spend our lives in a bubble!! Several years ago, when I was "healthy," I went to Costco, and stood behind a person who was coughing. At that time, I didn;t take flu shots. 24 hours later...guess what?? Yep. Got the flu and was sick for 3 weeks. If the mask theory were true, we should wear them permanently.
My Dad had SLE and he died at 67 from complications. On Saturday, I will turn 68. I feel I've beaten the odds of surviving past his age, and I have to believe that although I'm not infallible, I am not giving in to this disease and plan to live a normal life as much as I can. It's not the packing that's the problem..it's deciding what NOT to take IS! LOL!
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